Adapting Practically
A diagnosis of dementia may mean that we need to think about various practical adaptations to the home and the way we live, in order to maximise independence, and safe participation in enjoyable activities for as long as possible. Allowing time to adapt and having a mindset that is open to new ways of doing things can help reduce some of the possible feelings of anxiety or resentment about having to make these changes (see the RDS website page on adapting emotionally for further information).
Many RDS members find it helpful to carry a small pocket-sized card with them, that explains their diagnosis and the symptoms typically associated with it. There are various versions widely available, and some members choose to design their own. Please email contact@raredementiasupport.org for a downloadable template of the cards that RDS has created. Wearing the Hidden Disabilities Sunflower Lanyard is another way of alerting people around us to additional needs we might have. Many people find that wearing or carrying a device which enables GPS tracking gives them more confidence and provides peace of mind for both themselves, and the family and friends who support them.
It can be helpful to think about care needs on a sliding scale. At some times they may be more significant than at others. Trying to adopt an open mind about the ways and means through which support might be provided over time can be less daunting than thinking about the potential and most intense needs right from the start. That said, it is realistic to anticipate needs as likely to increase over time and to have a mindset as to how care and support might transition into times where more help is needed.
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At first I thought it would be impossible to do things any other way. I felt so at home with my routines and really resented having to make changes to simplify things. My daughter really helped me to identify things that could be done differently and in ways that helped.
RDS member
Home environment
Our homes are important to us. For most of us, they are a place where we feel safe, secure and comfortable. Even in the early stages, the symptoms of dementia can impact the way we manage within our home environment, and how comfortable we feel in it. Making changes to the environments we have lived with for a long time, or the ways we have become familiar with doing things, can be a challenge. It can feel very unsettling, and while we can look at practical ways to help make our home environment as safe and accessible as possible, it is important that we appreciate the emotional impact of having to reconfigure our homes in order to live there safely.
Some people begin to think about their present and future living arrangements at an early stage of their journey with a rare dementia diagnosis. As with any changes and adaptations that we face in life, it is helpful to think about our options sooner rather than later, and with time to think about adaptations and alternatives that might be possible.
Support may be needed to allow people to continue with routines and usual activities both inside and outside the home. With some adjustments, the home environment can be adapted to be continue to be a safe and supportive place where people living with dementia continue to feel secure.
Focusing on one change at a time can feel less overwhelming than trying to make comprehensive changes throughout our entire home and lifestyle.
Examples of difficulties in the home environment for someone living with dementia
“One of the first things we noticed was that my husband started finding it really difficult to drink a glass of water when we sat together at the table for dinner. He would constantly be knocking the glass over when reaching for it, and placing it at the edge of the table when putting it down again. I was always having to guide his hand to the glass and it was becoming so frustrating for both of us!”
“She was tripping over things in the house a lot- she seemed to be finding it much harder to lift her feet up, and was also bumping into tables and door frames. We ended up removing most of our rugs and low tables because we were worried about her falling.”
“I was finding it much harder to find items in amongst the clutter- it would all get lost in a bit of a jumble, and I had to make sure I kept things in the same place to be able to come back and find them again.”
Examples of difficulties in the home environment:
- People living with posterior cortical atrophy (PCA) may have difficulties seeing items, especially if they are in a cluttered space or full cupboard.
- People living with Lewy body dementia (LBD) may have difficulties with moving around the home environment, increasing the likelihood of trips and falls. There may also be challenges with perceiving what items in the house are, as these can be distorted due to misperceptions and visual hallucinations.
- People living with semantic variant PPA (semantic variant PPA (svPPA) may be able to see the items clearly, but mistake the purpose or function of them, for example mistaking brightly coloured washing up liquid for fruit cordial.
- People living with frontotemporal dementia (FTD) can sometimes become fixated with putting objects in their mouths (referred to as hyperorality), which can include edible, but also non-edible items, that may be found around the house.
- People living with young onset Alzheimer’s disease (YOAD) may have difficulties with remembering where everyday items are kept and difficulties completing everyday tasks, such as making a cup of tea.
Tips, strategies and adaptations for the home environment
The RDS website page on the senses contains relevant tips and adaptations in relation to different areas around the home. Additional suggestions are described on the RDS wellbeing page and the PCA Tips website also has information which, although written with PCA in mind, is transferrable across many other dementia diagnoses.
- Whiteboards around the house which can be updated with reminder notices about mealtimes, menu plans and where food is located, as well as more general information about appointments and schedules may be helpful.
- Replacing some of the more complicated household gadgets with simplified versions can help.
- Before spending significant amounts of money on making changes to the home environment, try to take a step back and think about whether this adaptation is likely to provide the right kind of support for long enough to make it worthwhile. It may be that there are other, simpler and less expensive adaptations that can be tried first. For example, before refitting a bathroom, try decluttering the bathroom space, using boldly-coloured, easy-to-use, contrasting-coloured items to help with location and identification, and using battery powered sensor lights that come on when movement is detected.
- Safety and security matter, but so does a familiar, comfortable setting. Rather than replacing items with new ones, look to see if there are some ways that current and familiar items can be adapted. Examples include: making an existing favourite chair lower or higher to allow for easier use or replacing the seat pads and cushions with similar but easier to remove and clean versions.
- Request a referral for an occupational therapist to visit the home and advise on adaptations which might be beneficial. Think about what colour these could be, in order to provide colour contrast. If items are being self funded, ask about money back options if purchased products don’t prove as helpful as hoped. VAT relief may also be available.
- Think about ways to improve access to rooms, areas, cupboards, spaces etc. as well as ways to simplify and improve getting around between these places. We all get used to the various idiosyncrasies of our own homes, but these can pose a real challenge when we are living with dementia. Having doors which can be fully opened, as opposed to only half opened because of furniture or boxes and bags on the other side, or drawers which open easily, without sticking or coming off their runners are just examples of simple improvements we can make to the home environment.
- Bookcases in hallways or on landings might look homely, but create narrowed spaces which make navigation along the area more difficult. Perhaps a few of the most treasured books could be placed on a shelf, located in a less central area.
- Kitchen drawers probably don’t need to be cluttered with multiple items which have the same purpose. One grater, one wooden spoon, one potato masher would probably suffice– and even better if they could all be different colours!
- Cookers can be fitted with safety locks, safe pour kettles can make pouring hot water easier and a range of additional safety enhanced appliances can help promote safe independence for as long as possible. There are lots of websites that sell equipment designed to accommodate disability, for example The Complete Care Shop and Age UK.
- Telephone systems can be complicated for all of us. Look for easy to use devices which simplify the process and make it easier to engage in. Doro is one of several companies which have a range of smart phones and devices which are designed to be easy to use.
Work and employment
Having dementia doesn’t mean someone automatically or immediately has to give up work. Dementia affects everyone differently, and for many people it is possible to continue working, albeit with some adaptations, for quite some time. For others, their symptoms or the type of work they do might make it more challenging to keep working. Decisions around work and employment can be challenging, and it is important for someone living with dementia to have support from their colleagues, employers, friends, family and support network, to make changes that work best for them.
Examples of ways that dementia can impact work and employment
“I started to lose track of emails and invoices, things that used to be relatively easy for me to manage at work. It was becoming overwhelming, particularly as I was self-employed. I eventually hired someone else to manage the administration side of things, which meant I could keep working for longer, focusing on the tasks that were more manageable for me.”
“My wife moved from job to job, and eventually worked for quite some time in a supermarket. She was able to stay for so long in that role because her manager was amazingly kind and understanding, and incredibly supportive at making adjustments to work around her needs and abilities. She absolutely loved working there.”
“My brother was still very capable of working, but his verbal communication was starting to become more affected. Initially, his colleagues didn’t really understand, as they thought dementia was about having memory problems. We ended up having some wonderful support from RDS to help them to understand more about his diagnosis and how to communicate with him.”
“She is such a talented artist. It was absolutely heartbreaking when she had to stop working because she just loved her work so much, and it was such an important aspect of her identity. We have been very creative in finding ways that she can continue to connect with the aspects of work that she loved- she’s joined a local art group, we go for lots of walks together and spend time in the garden. She’s doing really well and is really enjoying her new routine, and it is wonderful for us to be able to spend more time together.”
Examples of ways that dementia can impact work and employment include:
- becoming tired more easily and finding it hard to concentrate in meetings and throughout the work day. This might become worse in the afternoons
- changes to vision and perception making it more difficult to complete work tasks, particularly written and computer-based work
- finding it more difficult to understand, remember and complete usual work tasks
- difficulties keeping track of meetings, appointments, emails and administrative tasks
- problems communicating with colleagues and clients- this can include verbal and written communication
- difficulties with physical aspects of work, due to movement or mobility changes
- being less patient with others and with work tasks
Tips, strategies and adaptations for work and employment
- Dementia is classified as a disability and an employer cannot dismiss an employee, or force them to take early retirement just because they have dementia. Employers have a legal duty to make reasonable adjustments to help people continue working if they know about your diagnosis (or if they could reasonably be expected to know). Talk to your employer about whether they can find ways to help you continue at work. Retiring on medical grounds may also be an option.
- Your employer likely won’t know much about the type of dementia you have been diagnosed with. It can be helpful to provide more information about your diagnosis, and the aspects of your role that you might need more support with if you are able to continue working. Speak to the RDS Direct Support Team by emailing contact@raredementiasupport.org for more support.
- Ask for a recorded meeting with your employer to discuss potential support for now and in the future. Ask for someone you trust to be present to support and advocate on your behalf. Ask that review meetings with managers are scheduled and recorded.
- There may be several adjustments that can be made to enable someone living with dementia to continue working, depending on what is feasible, the type of work they do and their symptoms and preferences. For instance, reducing the number of days or hours that someone is working, having more support or assistance with specific tasks that they are finding more difficult or taking on different roles within the organisation that align more closely with their needs and abilities. Try to work together with an employer, as well as friends or family members, to find feasible adjustments that work for the person living with dementia, as well as their employer and colleagues.
- If you are self-employed, you will likely need to think about making changes to your role, reducing your workload, or handing some of the work over to other people. It is important to try and plan as early as possible to ensure a smoother transition process.
- It is important to remember that even if a diagnosis of dementia impacts someone’s usual paid employment, it does not necessarily mean that they cannot continue to work in some other way.
- When someone living with dementia has to stop or reduce work, this can mean they have more time than previously to fill. It can be helpful to think about other activities that would be good to try. Joining groups for people with dementia or joining other local community groups and trying different activities can be helpful– there are a lot of options! There may be opportunities to focus more on activities that someone already enjoys or to try something new. Please see the RDS website page on engagement for more examples of activities that might be possible.
- Some people living with dementia find volunteering in their community to be an enjoyable activity, providing meaning, purpose and routine. There are many different ways to volunteer, depending on abilities and interests. Some RDS members have found opportunities to share their experiences of living with dementia helpful, by generously volunteering as an RDS Champion. The Alzheimer’s Society also supports people to share their lived experience of dementia through volunteering opportunities. There are many other ways to volunteer in the community, including: listening to children read in schools, helping out at a local food bank, volunteering in charity shops, community cafe’s and other local or charitable organisations. Speak with local organisations to find out what opportunities are available in your area. The government website also has more information on volunteering opportunities.
- It can feel overwhelming to think about a lot of activities all at once, and it can be helpful to try and slowly build up a routine. Prioritising activities that are enjoyable can also be a way of focusing on the many things that are still possible to do while living with dementia.
Travelling
There are some aspects of travel that can become more difficult when someone is living with dementia, which can lead to stressful situations for the person living with dementia, and those around them. This doesn’t mean that a person living with dementia has to stop travelling completely. With some adjustments and advance planning, there remain many opportunities for safe and enjoyable travel while someone is living with dementia.
Examples of ways that dementia can impact travel
“I have a routine where I regularly get the same bus. The bus drivers know me, they know that I might need a bit more time to get on and off, and they wait for me to sit down before they drive off. I also wear my sunflower lanyard to let people know to be a bit more patient with me. I can still get the bus by myself and that independence is really important for me, particularly as someone who lives on their own.”
“He gets a lot more stressed than he used to, and takes a lot longer to get ready to go out. If we have a specific train or bus that we need to catch, I have to make sure that we have a lot more time available beforehand to make sure we are out the door on time. It is really frustrating for both of us, and I much prefer to drive because it gives us a lot more flexibility about what time we need to leave and we can stop along the way.”
“I make sure to always ask for passenger assist ahead of every journey now. This has been so helpful for us to reduce stress – we are met by the staff in the station, helped on and off the train and they are usually very kind and reassuring. This has been amazing in airports as well, which is just such an overwhelming environment for us.”
Examples of ways that dementia can impact travel include:
- difficulties planning journeys
- challenges with understanding and communicating when using transport
- problems navigating to and from destinations
- difficulties moving about, including getting on and off transportation, and in and out of cars
- finding it hard to read timetables, departure and destination information
- difficulties using automated ticket machines and entry/exit gates
Coach travel
Travelling by coach has the benefit of removing the need for a driver, and allows all members of the travelling party to be available for any additional support needs, but does of course limit personal choice options.
- Contact the coach company you are traveling with to see what support or assistance they might be able to offer to make your journey smoother. Access to the aisle and proximity to toilet facilities may be helpful things to request, although these facilities are not always accessible, which is another reason that it is helpful to check ahead of time. For example, National Express Coach Service has a dedicated Assisted Travel Team, available by telephone on 03717 818181 (8am-8pm, 7 days a week) to talk through any additional needs while using their services. Alternatively, email them in advance of booking tickets to discuss travel needs using their assisted travel form. Please see the National Express website for further details.
- More information about accessible coach tours is available via the Disabled Holidays website
- The driving mobility website also has further information on coach travel for people with disabilities.
Rail travel
Like travelling by coach, travelling by rail removes the need for a driver. There are additional options when choosing this means of travel, for example, the proximity to toilet and luggage facilities, a quiet carriage and access to the aisle.
- Disabled Person’s Railcard: People living with a rare dementia may be eligible for a Disabled Persons Railcard, which entitles them to 1/3 off adult rail fares for travel across the UK with no time restrictions. Another adult, travelling in accompaniment, will also get 1/3 off their rail fare.
- National Rail – Passenger’s Assist: National Rail offers a range of Travel Assistance services. This includes a Passenger Assist service which operates with all train companies and can help with getting around the station, boarding trains, or arranging ramps. Assistance can be booked 24 hours a day by contacting Passenger Assist on freephone 0800 022 3720.
- Accessible Travel with Great Western Railway – Passenger Assist must be pre-booked at least 2 hours before your journey. This can be done via an online form, by app or by calling the freephone number (0800 197 1329).
- Passenger Assistance – an app and website that takes the time and fuss out of requesting assistance when you want to travel by rail.
- Transport for London (TFL) – Transport Accessibility: Travelling on an underground system can be overwhelming for all of us at times. Look for routes with minimal changes where possible. A range of helpful services for getting in and around London is available via the TFL website. This includes information on booking assistance, how to find staff, assistance to and from trains and more.
- Telephone London Underground Customer Services on 0343 222 1234 or use the details available on the help from staff section of the TFL website.
- Specifically ask if they can arrange for someone to meet you in the entrance area of the station at which your journey begins, and accompany you down to the platform and onto your train. Ask them to radio ahead to an official at the relevant station to assist with any required platform changes or exiting the station.
- Underground metro services in other cities will usually have similar support and assistance services available.
- The driving mobility website has further information on national rail travel and international rail travel for people with disabilities
Air travel
At times, the level of activity in an airport can be distracting, overwhelming and difficult to manage, especially for someone living with dementia. The following suggestions may be helpful when planning air travel.
- When travelling by plane, allow extra time for getting in and out as well as around the airport.
- Avoid scheduling flights that require tight connections and ask about airport escort services that can help you get from place to place within the airport.
- Where possible, avoid booking flights at busy times of day, during the weekend, and during busier times of the year to travel, including school holidays and the festive period.
- Consider requesting a wheelchair so that an airport employee is assigned to help you get from place to place.
- It may be appropriate to request electronic car (buggy) assistance when travelling through the airport as this will enable a person living with dementia to have a carer accompany them, providing reassurance and security.
- Inform the airline and airport medical service department ahead of time of any additional support needs as most airlines will accommodate special needs and you may be able to access services such as priority boarding and support with navigating security checks.
- If appropriate, tell airport employees, screeners and in-flight crew members that you are living with dementia, so that they are aware and reminded. Wearing the Hidden Disability Sunflower Lanyard helps keep staff and other passengers alert to any additional needs that might be present. You can use this together with a ‘helpcard’ with a brief description of the areas in which the person living with dementia may need support. Please contact the RDS Direct Support Team by emailing contact@raredementiasupport.org for more information about ‘helpcards’.
- The Civil Aviation Authority provides information for passengers with a disability and reduced mobility, including people living with dementia. This includes information about your rights and how to access ‘Special Assistance’, when travelling by air.
- Within the EU, passengers with a disability or reduced mobility are currently legally entitled to support, commonly known as ‘Special Assistance’. This means airports and airlines must provide help and assistance, which is free of charge, and helps ensure you have a less stressful journey.
- Similar passenger rights apply outside of the EU in other countries such as the UK and United States, but there may be other countries where this support is not available.
- Useful information about travelling with additional support needs is also usually available on the websites of the individual airport and airline being used. For example, visit the Gatwick, Manchester and Heathrow websites for information. This document also provides some advice for air travel at Heathrow.
- Flying can be a difficult experience for many people, including people living with dementia. Try to plan ahead where possible and find ways of making the flight as soothing as possible- this might involve noise-cancelling headphones, soothing sensory activities (e.g. fiddle products), having preferred snacks available and playing relaxing music.
- The driving mobility website has further information about international air travel for people with disabilities.
Boats/cruise travel
Traveling by boat, ship or on a cruise may be a possible option to explore when someone is living with dementia. It is important to check with the boat operator before traveling, regarding the person living with dementia’s specific needs and any concerns about safety while onboard. There may also be specific assistance available for people with accessibility needs, including people living with dementia. Please check with the specific company you are travelling with regarding support and accessibility needs, for instance:
- Cross Channel Ferries offer passenger assistance, and may be a more accessible option for people living with dementia to travel overseas. The driving mobility website has further information about assistance with cross-channel ferry crossings, as well as ferry services within the UK. They advise requesting assistance 48 hours before travel.
- WightLink Ferries offer accessible travel and customer assistance, as well as discounts for people with disabilities. They ask that customers let them know how they can help as soon as possible and at least 48 hours before travel. They also offer quiet spaces and changing places toilets.
- RedFunnel offer special assistance to people who pre-book at least 48hrs before travelling, including assistance for blind or visually impaired passengers.
There are also specific companies that offer dementia-friendly boat trips, such as:
Please discuss your specific requirements with the provider before booking.
Cruises
Depending on individual needs and preferences, dementia-friendly cruises can be an option to consider when planning a holiday with someone living with dementia. Many RDS members have shared positive experiences of the support they have received, and the benefits of a cruise holiday for the person living with dementia. There are important aspects to consider when booking a cruise, for instance the size and layout of the boat, the length of the trip, accessibility needs of the person living with dementia and any additional support that may be available. It is important to speak to the tour operator before booking, to discuss individual needs.
The driving mobility website has further information on cruises for people with disabilities
Tips, strategies and adaptations for travel
- Be aware of abilities and of the areas where support is needed.
- Consider how far to travel, at what time of the day, and by what means. Where possible, choose to travel during the time of day that works best and avoid the times of day when tiredness or confusion is more likely.
- Keep reviewing whether journeys are worthwhile, if they are providing benefits or meeting important needs. Some people will get pleasure simply from the journey itself, regardless of the destination. For others, the journey may not be so enjoyable, but worth it for the arrival at a chosen or loved destination. Sometimes, the journey is essential, for example in order to get to a hospital or other appointment. Decisions about whether and how to travel can be reviewed on each occasion.
- Let transport operators and accommodation providers know in advance that you are travelling and what additional needs are anticipated.
- Taking a bag of ‘travel essentials’ which includes a travel itinerary, a fully charged phone, spare change of clothes, any regular medications, and enough supplies of food and drink, should there be any unexpected delays or mishaps. A list of emergency contacts, the name and contact number of the GP or other significant doctors, and a list of current medications and dosages is reassuring to have on hand. Photocopies of important legal documents, such as lasting power of attorney (LPA), and additional copies of tickets and passports is also a good idea. Make sure any bags are labelled with a name and address.
- Having tracker devices on mobile phones turned on, or using GPS trackers bought for this purpose can help alleviate anxieties around getting lost in new and unfamiliar places (see the additional resources section below for website links).
- Having emergency contact numbers stored on the screen lock face of a phone is another way of providing emergency back up.
- Factor in regular toilet stops in order to avoid last-minute urgent stops, which may result in distress or accidents. Apply for a RADAR key to unlock disabled access toilets at shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country.
- Make sure that travel insurance is up to date and that insurers are aware of the diagnosis of dementia.
- Consider wearing the Hidden Disability Lanyard, a Medic Alert bracelet or a similar means of alerting people to the fact that there may be additional support needs.
- Carry pocket-sized cards which describe the diagnosis in case they are needed. These cards can help to quickly alert people to additional needs, or to explain circumstances or behaviour without the need for lengthy conversations. To request a diagnosis-specific helpcard please email contact@raredementiasupport.org
Driving
Driving often symbolises freedom and independence, as well as providing a practical form of transport. It can be a very difficult thing to have to stop doing.
Driving is a complex task involving interaction between the senses, thought processes and manual skills. Being able to react quickly to other road users, judge distances, being able to read road signs, follow the route and remember the destination point are all required functions of the driver. There are a lot of processes involved in driving, including memory, decision making, vision, motor skills, coordination, spatial awareness and concentration. All of these processes can be affected in someone with a diagnosis of dementia, so it is important that the ability to drive safely is assessed and reviewed regularly.
Having dementia does not necessarily mean that a person needs to give up driving immediately, however there is a legal requirement to inform the Driver and Vehicle Licensing Agency (DVLA) and the car insurance company of the diagnosis. The DVLA then makes a decision about whether a license can still be issued, based on information they receive from the license holder, the GP and/or medical consultant. They may decide to renew the license for a short period after which they will review and reassess, they may request that a driving test be taken, or may decide it is appropriate to cancel the license. In addition to these legal requirements, the person living with dementia can undergo a series of lessons with a local driving instructor, to reassure themselves and others that their driving skills are appropriate and safe.
Many people describe the challenges they face on both a practical and personal level when they need to stop driving because of a rare dementia diagnosis. Research shows that having to stop driving is a significant life transition that leads to unique social challenges for people living with younger onset dementia because of financial and family commitments, employment and/or raising a family. People living with dementia often need support for the emotional and practical adjustments and to reduce social isolation when driving is disrupted or stopped.
Blue Badge Scheme
The Blue Badge scheme is predominantly for people with severe mobility and sight problems. It allows holders to park in accessible parking spaces, usually close to shops and other venues. Although people living with dementia of all kinds may be eligible, this is somewhat dependent on the local authority, and people living with dementia may sometimes be turned down for a blue badge. For further guidance on applying for a blue badge for someone with dementia please see the Government website, and Alzheimer’s Society information. You can also ask your local AgeUK or Citizens Advice for further support with the application process.
Being in possession of a Certificate of Vision Impairment can help secure a blue badge application.
Examples of ways that dementia can impact driving
“I find that traveling in the car now gives me horrible motion sickness with the other cars whizzing by, especially on the motorway. I can now only do short journeys in the car, and we try to avoid the motorway if we can. I find that trains are a much more comfortable way to travel for me now.”
“It was so hard for me to give up driving. I feel very cut off from my usual activities. It’s even harder because we live in such a remote place and my husband doesn’t drive.”
“Mum didn’t seem to realise that her driving had become dangerous. She had started having some small accidents, but wasn’t telling us about them. It was only when I was in the car with her that I realised that it wasn’t really safe for her to be driving anymore. We tried so hard to help her to understand why she had to stop, and in the end we had to take away her keys and sell her car. It was a horrible and very upsetting process for all of us to go through.”
Many people living with dementia are aware that their driving abilities have changed. However, in some cases, the changes in the brain caused by dementia may inhibit the ability to self-assess driving skills and may lead to a compromised or incorrect view of driving capacity. Sometimes it is the passengers who recognise changes in the way a person is driving.
Some of the ways that dementia can impact driving include:
- incorrect signalling
- difficulty navigating turns
- confusion at entry and exits points
- increased irritation when driving, either with self or other drivers
- inappropriate parking
- hitting kerbs
- misjudging distances
- scrapes and dents on the car
- delayed responses to unexpected situations
- getting lost in familiar places
- or an increase in the number of accidents.
Tips, strategies and adaptations for driving
For some people, stopping driving is a relief and something they are comfortable to relinquish. For others, it comes as a hard blow and affects the way they feel about their independence, roles, identity, and abilities. Some people feel empowered by taking control over the decision to stop driving in advance of it being forced upon them and research findings suggest that people adapt more easily to stopping driving when they make the decision themselves.
- It is important to have support when making and implementing decisions about driving. Whether a person chooses voluntarily to stop driving or is subject to the decision being imposed upon them, they will usually need some support to help them adjust to this change.
- Start having conversations about driving as soon as possible, so that they become part of routine conversations and less of a topic to be avoided.
- People may feel angry and frustrated about the need to stop driving. It is important to get emotional as well as practical support. These feelings are understandable, and it is important to share them with family members, friends or appropriate professionals.
- There are opportunities to speak to other people who have been through a similar experience in many of the Rare Dementia Support small groups. It often helps to know that other people have found ways to adapt, and that we are not alone in this challenge. RDS facilitates a range of peer support groups both for people living with a rare dementia diagnosis, and for their carers, family and friends. These groups provide opportunities for groups of up to 12 RDS members (separate groups for people living with a rare dementia and care partners) to meet via a video call with a member of the RDS team to spend time sharing experiences, questions and advice. Get in touch with the RDS Direct Support Team by emailing contact@raredementiasupport.org to discuss this further.
- Share the conversation and decisions about driving with other people such as family members, friends, and professionals.
- Depending on the type of dementia a person is diagnosed with, there may be a denial or lack of insight about the need to stop driving. This is particularly the case in frontotemporal dementia (FTD) and where damage has occurred to the frontal parts of the brain, which are responsible for insight and awareness, and where impulsivity is a symptom. Where this is the case, it may be necessary to remove access to the car altogether to ensure the safety of the person with dementia and those around them. Removing the car keys or moving the car temporarily to another location may provide sufficient enough time for the thoughts about driving to diminish.
- If there are concerns about driving abilities, this driving self-assessment checklist can be a useful resource to help identify areas of risk.
- Whether travelling by car as the driver or passenger, make sure that seats and seatbelts are positioned appropriately and that all passengers, but particularly any who have dementia, are as comfortable as possible. Listening to the radio or favourite music may help to make the person living with dementia feel more comfortable if they find traveling in the car difficult.
- Depending on the needs of the person living with dementia, there are also wheelchair accessible vehicle options available. The Motability scheme may also be relevant for some people living with dementia.
- Be additionally aware of safety and potential hazards getting in and out of the car. Allow extra time for supported assistance during this part of the journey. Where appropriate, use the safety door lock systems that are available within the vehicle, to minimise the risk of unintended opening.
- Try to be as sure as possible about the route ahead of setting off. Likewise, have an idea of safe stopping places along the route, and parking facilities at the destination point. Try to factor in stops along the journey to break it up.
- Ask the GP or appropriate medical consultant for a copy of the letter they send to the DVLA describing their assessment of eligibility to continue driving.
- Finding alternatives to driving ahead of the need to stop, may help minimise the impact of stopping driving when it comes.
- Explore alternatives, such as taxis and community transport. Initiatives such as Dial-a-Ride may be available to residents in London boroughs, and there are many similar locally organised initiatives across the country. Some charities and community organisations also offer assistance with driving for those who may need transport to appointments- please enquire with your local services.
- Some toll roads have exemptions for people living with additional support needs (e.g. the M6 Toll Road). Enquire locally to see what options may be available if these are roads that are frequently used or use the Blue Badge Company website to find information about major toll roads.
- Family members and friends may be willing to provide transport and lifts, if asked with enough time to plan.
Going on holiday
Going on holiday can be a time of additional complexity for all of us. Regular routines are shifted, many of the cues we have for much of our social and practical engagement are lost, and we find ourselves living in places that are unfamiliar and not always easy to navigate. While many of these factors are what we seek in a holiday, they can be precisely the changes that can be challenging for people living with dementia.
Being aware of what routines and environments are particularly helpful, and which are less critical, can help us as we make decisions about holiday destinations and accommodation. It is important to try to make the most of holiday times and to maximise the opportunity to continue to do things that are enjoyed, but also be mindful that what was previously sought in a holiday may no longer be quite as easy to navigate. Consider shorter versions of the same activities, rather than setting out from the outset on long days or activity schedules.
An alternative to going away on holiday can be to allocate days at home to special activities; a ‘staycation’. At the other end of the spectrum, there are holiday providers who cater specifically for people living with dementia and their additional support needs (see the additional resources section below for website links).
In addition to the general information on travelling in the sections above, there are some additional suggestions that may be helpful when planning a holiday.
- Consider the length of the trip (these may need to be shorter than those previously taken), the destination (it may be helpful to visit familiar locations) and the activities (these may need to be adapted to suit the needs of the person living with dementia).
- Be aware of time differences and the impact these might have. The person living with dementia might need some time to settle in to the different environment and routine. A ‘dementia-friendly’ clock might be a helpful way to orientate the person living with dementia (see the additional resources section below for website links).
- Let accommodation providers and travel and tour operators know in advance about the diagnosis, and any additional support needs. Be specific about what would be helpful. For example:
- a room at the end of the corridor with fewer passing people
- an accessible room on the ground floor, if someone has difficulties with movement or mobility
- a menu that is available in advance, so that meals can be decided ahead of arriving at the table
- a table that is in a quieter corner of a restaurant, if that makes for more privacy and easier communication.
- Take some information about the diagnosis in the form of a simple fact sheet or booklet (either hard copy or electronic). This can be helpful if the need arises for symptoms to be explained speedily. RDS does have some translated documents, but it is also possible to translate documents using appropriate software for this purpose, ahead of leaving.
- Remember that a holiday ideally meets as many of the needs as possible for all parties. The needs of the person living with dementia are important, but the needs of those supporting the person with dementia are also important to consider. Look for options that allow for this as far as possible, for instance holiday packages that include additional care or support (see the additional resources section below for website links).
- Have a list of emergency contacts, the name and contact number of the GP or other significant doctors, and a list of current medications and dosages. Photocopies of important legal documents, such as lasting power of attorney (LPA), and additional copies of tickets and passports is also a good idea. Make sure any bags are labelled with a name and address.
- If possible, assign someone who is not on the holiday to be on standby for making any short notice re-scheduling plans on your behalf (for example if a journey is unexpectedly re-routed and alternative tickets/plans need to be purchased).
- Lasting power of attorney (LPA) documents can be helpful in confirming that one person has permission to act on behalf of another, in situations which might not be immediately obvious to an onlooker. In the case of lost passports or tickets, they help provide an alternative signature provider on temporary or replacement documents.
- Make sure that a copy of the itinerary and relevant contacts are available throughout the holiday, including journeys to and from the holiday destination.
- Tracker devices on mobile phones or using GPS trackers bought for this purpose can help alleviate anxieties around getting lost in new and unfamiliar places (see the additional resources section below for website links). Having emergency contact numbers stored on the screen lock face of a phone is another way of providing emergency back up.
- Several RDS members find it helpful to carry a small pocket-sized card with them, that explains their diagnosis and the symptoms typically associated with it. There are various versions widely available, and some members choose to design their own. Please email contact@raredementiasupport.org for a downloadable template of the cards that RDS has created. Wearing the Hidden Disabilities Sunflower Lanyard is another way of alerting people around us to additional needs we might have.
Going into hospital
As is the case for anyone, a person living with dementia might need to go into the hospital, for example, because of a planned appointment, or to address a more urgent need. Hospitals are busy environments that can be unsettling for people living with dementia, their family, friends and carers, and it is important to try and plan ahead where possible to try to minimise these challenges.
Examples of ways that hospital visits can be challenging for people living with dementia
“Mum had a broken arm and we were really worried about her going into hospital, but she was in so much pain and the doctors needed her to have the scan to know how to take care of her properly. We spoke to the hospital staff about her diagnosis beforehand, they booked transport to and from her care home and I was able to go with her. It was a busy and stressful time, but the staff were really so supportive throughout, which made it so much easier.”
“The hospital staff were telling me that he was refusing to eat, but he would always eat when I was visiting him. I realised that they were leaving the food in front of him and he wasn’t having any help to eat, and then they would just take the food away. I spoke to the nursing team to let them know that he needs help with his cutlery, and that he takes a long time to eat. They made sure the healthcare team was aware of this by having a sign next to his bed. I tried to visit him as often as I could to help.”
“I had a short stay in hospital for an infection, and I found it much harder to be at home on my own after this. For the first few weeks I needed a lot of help with cooking, washing and getting dressed. The hospital discharge team arranged this for me before I went home, and my family were great at making sure I was getting on OK. I could not have managed without this.”
Examples of ways that hospitals can be challenging for people living with dementia include:
- feeling disorientated in a new, busy and unfamiliar environment
- needing someone to advocate on their behalf due to communication difficulties and/or illness
- difficulties understanding what is happening and why treatment is needed, which may lead someone living with dementia to be reluctant to accept treatment and help with personal care
- difficulties making decisions regarding treatment options
- increased pain, agitation, anxiety, restlessness, confusion or distress due to illness (sometimes leading to delirium)
- challenges eating, drinking and walking without usual support available
Tips, strategies and adaptations for going into hospital
The list below includes a range of suggestions that might help everyone feel as prepared as possible for hospital visits and allow for staff to understand how best to provide the most appropriate care. Some will feel more applicable than others, and as ever, take or leave these suggestions as feels most appropriate in the circumstances.
- Where possible, ask whether a hospital admission is absolutely necessary. Enquire to see whether there is an alternative appointment type available, for example via the community nursing, GP or palliative care teams. For people living with with advanced dementia, ask for the medical team to assess whether the benefits of going into hospital outweigh the potential challenges.
- If the appointment is necessary, and if you know about it in advance, contact the hospital department ahead of time to ask what additional support might be available, and to explain the diagnosis and the way that symptoms are best managed.
- Attending hospitals or clinics for routine scheduled appointments allows for planning and preparation in a way that unscheduled emergency admissions do not, but planning ahead to the possibilities of both, at least allows us to have prepared mentally and practically as far as possible. Make time to discuss options and decisions across a range of circumstances, including preferences for care and treatment wishes. Have these conversations as soon as appropriate after diagnosis to avoid needing to have them when a crisis occurs.
- If a person lives in a care home it is important that their wishes about hospital admissions are discussed before they enter the care home and this should be clearly stated in their care plan.
- Speak to the admission staff and enquire whether there is a dementia advocacy system in place within the hospital (see the additional resources section below for website links).
- Many nursing and residential care homes have developed a Red Bag for Hospital Transfer procedure for residents that require hospital admissions. It is intended to aid good communication during the hospital stay and reduce the likelihood of incidents which will delay a timely discharge. Although this has been designed specifically for care homes, a similar provision can be made by people living at home. Having the following prepared and ready somewhere safe but not too far from the front door is a sensible provision to make:
- A packed bag (preferably not red, so as not to confuse with care home residents) labelled with full name, date of birth and NHS number, with a photograph if possible and containing the items listed below.
- A completed This is Me document
- A current medication list with detailed dosage and frequency information
- An emergency contact list
- A note on the present functioning level of the person living with dementia, so that there is a baseline to work with and to offer potential rehabilitation towards
- Information on the type of dementia that has been diagnosed
- ‘Easy to wear’ hospital admission clothes, nightwear, glasses, hearing aids, toiletries, etc. Make sure all aids are labelled by name and that any documents have a full name, date of birth and NHS number on them.
- Lasting Power of Attorney (LPA) and Advance Decision to Refuse Treatment (ADRT) documents if available
- A notice for the top and bottom of the bed, explaining that there are additional support needs because of a dementia diagnosis. Please contact the RDS Direct Support Team by emailing contact@raredementiasupport.org to request self-print diagnosis-specific hospital cards.
- A packed bag (preferably not red, so as not to confuse with care home residents) labelled with full name, date of birth and NHS number, with a photograph if possible and containing the items listed below.
- If possible, it can also be helpful to take personal items, such as framed photos, to help the person living with dementia to feel safer and more comfortable in a busy and unfamiliar environment. You may need to check with the hospital as to what items are allowed.
- It can be helpful to create a summary booklet with essential and relevant information, photographs, and with tips to support the healthcare professionals in their understanding and communication. Ask staff to use video call options to help with interaction between you for the duration of the hospital stay. It is important that staff are made aware of any communication difficulties or other significant support needs.
- Have any Advance Directives, Advance Care Plans or Lasting Power of Attorney documents, which will enable decisions about care needs and preferences to be made more easily, readily available to take to hospital appointments.
- Hospitals are busy places. Staff may be busy, but they do need you to communicate with them. Making a list of the questions we want to ask can help us be more focused in the moment, and making notes of any answers can help us remember what was said, and can be helpful to refer back to. Mornings are particularly busy so afternoons may be better times for co-ordinating updates. Ask the hospital staff when the best time is for these conversations to happen.
- Ask for the ward managers name and to be introduced to them. Ask how to identify the key worker to have regular communication with, the ward social worker and whether there is a dementia lead person for the hospital.
- Speak to hospital staff about pain management, particularly if the person living with dementia is unable to express verbally that they are in pain (see the RDS website page on pain for more information).
- If the person living with dementia is struggling with eating and drinking, speak to the staff about ways that they can support them- for instance, having a sign next to their bed to let staff know that they need more help with mealtimes, having coloured plates and adapted cutlery available, and finger food options. Ask for a referral to the hospital dietitian for more support.
- The ward and clinic staff may not know about rare dementias so may need you, your family and friends to explain the diagnosis. Be prepared to share your expertise to enable the professionals to understand and provide their best care. Use RDS resources to help inform staff about rare dementia symptoms and direct professionals in any department to the information the RDS website. Please contact the RDS Direct Support Team for more information by emailing contact@raredementiasupport.org.
- Do not accept a discharge until it is completely safe and appropriate care is in place. There should be a named discharge coordinator. Let the person responsible for the discharge know if you don’t feel that adequate care provision is in place and use the words This is an unsafe discharge. See the Alzheimer’s Society website for more information on hospital discharge processes.
Registering as a carer
Care means many things to different people. Some people feel at ease with the role and label of ‘carer’ while others don’t feel that it is a word which adequately covers the roles they are adopting. Stepping into a caring role can be a wonderful privilege, and it can also bring its own challenges, complexities and mixed feelings. Please see the RDS website page for more information about the emotional impact of caring.
It is very common to struggle on for too long before asking for help. We don’t need to wait for things to reach a crisis point before putting things in place to help make life easier. The sooner we put extra support in place, the less likely we are to reach avoidable crisis situations.
It is important to register as a carer with the person living with dementia’s GP practice. The level of support offered to registered carers varies between surgeries, for example, there may be more flexibility in appointment times and access to a Carers Champion at the practice, who can assist with a wide range of support enquiries. There may also be early and free access to seasonal vaccinations for people who are registered as carers.
Other places where it can be helpful to register as a carer include:
- the local authority (social services) – so that they can direct you to additional local support
- you can also complete a carers assessment, either through the local authority or your local carers organisation
- letting your employer (if relevant) know that you have caring responsibilities can enable access to flexible working arrangements and carers leave
- if younger children are living at home with the person living with dementia, or involved in their care and support, it can be helpful to let the school know so that further support can be offered
Some people register their role as a carer with Medic Alert , in order to provide a speedy alert that should anything happen to them, a person in their care is instantly vulnerable.
How can I access additional support as a carer?
Allowing someone into our home can be daunting and may feel that our privacy will be compromised. Even in the early days following the diagnosis, allocating funds, or using money that has been granted as a result of a care needs assessment or welfare benefit, might be well spent on employing a cleaner. Having this task assigned to someone else can be a good way to ‘open the door’ to having someone helping in our home. If it is possible to find a cleaner with some care experience, we may find that as relationships develop, so may trust, and the ‘cleaner’ may be able to diversify their role and gently progress towards a professional carer role and responsibilities. They may do this by spending time on outdoor activities such as walking with the person living with dementia, or by providing the encouragement that prompts washing and dressing for the day. It might be appropriate to engage a professional carer to do activities together with the person living with dementia, such as accompanying them to go swimming, or involving them in making art, or music, either at home or in organised groups. Sometimes just having someone else to be with the person living with dementia is what everyone needs.
Breaks from caring responsibilities (also known as ‘respite care’) are often helpful as are increased packages of care, as needs grow. Professionally provided care can be from as little as two hours a week right through to 24 hours a day in a different setting. It is important to start looking for care options before the need arises so that we have an idea of what is available and any local preferences we might have.
Getting the Lasting Power of Attorney (LPA) in place for both Property and Finances and Health and Welfare is important to do as soon as possible, as well as completing advance decision and advance statement forms
What if something happens to the main carer?
After the news of a dementia diagnosis, some people prefer to avoid looking too far ahead and thinking about what might be to come. However, some planning for the future is essential. This planning can include thinking about what help we are likely to need as time goes by. Amidst planning for future needs, it is easy to focus on the current and potential needs of the person living with dementia, but it is important to remember that needs might also arise for carers too. It doesn’t take a major crisis for carers to find themselves unable to provide the level of care that the person living with dementia needs, for instance because of a broken wrist or a bad cold. It is important to think ahead about what contingency plans are possible. Who else can help? Who would you want to involve?
Visiting local care homes ahead of any need is a good idea and allows for everyone to get an idea about which ones would be best to consider for short term care in an emergency situation or longer term care, should it be required. Explore the options around local home care or live-in care too. Once all options have been explored, decisions are easier to come to and potential crises are less frightening to contemplate and manage. Without planning for these eventualities, there is the risk that hurried decisions are made, when everyone is at their least able, leading to less-than-ideal decisions and further exacerbation of a problem.
If a main carer requires an emergency hospital admission, it is possible that there won’t be anyone available to advocate for them in the moment, or to provide immediate cover for caring responsibilities. Preparing for this eventuality may seem extreme but can make life a lot less complicated should the need arise. Having the same preparations in place as described above for the person living with dementia going into hospital is a sensible precaution.
Providing the main carer is registered as such, some local councils will provide emergency care cover. Make local enquiries about what cover is available by contacting your local carers organisation and/or social services and asking about the carers emergency scheme. Some councils also offer a carers emergency card that includes contact details of a friend, relative or someone from the local authority that can be contacted in case the carer is unavailable due to illness or injury, so that the person they care for can be supported in the meantime.
Mitigating risk
There are many ways in which people living with a rare dementia find themselves at increased risk. When these risks relate to functional and practical domains, we can try to put in place adaptations to help make an environment as functionally safe as possible, for example by adding in extra lighting, handrails or decluttering and simplifying. When the risks relate to someone’s thinking abilities; the ability to plan, problem solve and make decisions, creating safety nets doesn’t always seem so straightforward.
Living in an entirely risk-free environment is not possible for any of us, but there are some precautions that we can put in place to help mitigate these types of risks too. Making sure that Lasting Power of Attorney is in place for Property and Finance and for Health and Welfare, arranging for precautionary safeguards with our bank in regard to maximum transaction limits, or asking someone who is known and trusted to be an advocate in certain situations.
Wearing a sunflower lanyard can help to make other people more alert to any additional support needs or carrying a brief summary of information about the rare type of dementia that a person has, can be helpful in situations where additional support is needed.
Please see RDS website pages on living well and empowerment, rights and entitlements and safeguarding for more information.
Safeguarding
Some of the changes in a person’s thinking abilities might lead them to make unwise decisions. At times, they may also make unsafe decisions, and it is these unsafe decisions that raise safeguarding concerns.
Legislated protocols are in place to help make sure that people’s best interests are represented and safeguarded when they are considered to be at risk and do not have the capacity to make decisions for themselves.
Social Services have an emergency safeguarding procedure which can be enacted if there are safeguarding or risk concerns. Safeguarding is ‘everybody’s business’ and members of the public can type the name of the county council and the word ‘safeguarding’ into the search bar of a browser for details of the locally specific process. For example; ‘Hertfordshire County Council safeguarding’. Alternatively, speak to a care professional or a member of the community mental health team for advice on how to manage a safeguarding referral for someone who is perceived to be at risk to themselves or others.
Where necessary to ensure safety and avoid the risk of harm, be prepared to call 999 for emergency assistance, explaining the situation and giving clear information about the dementia diagnosis.
See the RDS website page on rights and entitlements for further details about safeguarding procedures.